Compass to Care helps families pay extra cancer costs for children

Friday

Mar 23, 2012 at 12:01 AMMar 23, 2012 at 10:18 PM

When Michelle Ernsdorff was 14 months old, she was diagnosed with a Wilm’s tumor, a form of kidney cancer. Her parents took her 200 miles from their home in Dubuque, Iowa, to the Mayo Clinic in Rochester, Minn., for two years of treatment that started with surgery to remove one of her kidneys and continued with radiation and chemotherapy.

Geri Nikolai

When Michelle Ernsdorff was 14 months old, she was diagnosed with a Wilm’s tumor, a form of kidney cancer. Her parents took her 200 miles from their home in Dubuque, Iowa, to the Mayo Clinic in Rochester, Minn., for two years of treatment that started with surgery to remove one of her kidneys and continued with radiation and chemotherapy.

Finally, in 1976, Michelle was in remission. The ordeal was over. But Michelle grew up hearing about the experience. Once, when she was unexpectedly hospitalized after her parents had brought her for treatment, her dad hitchhiked home. He needed to get to work; the family needed his paycheck. Her mom needed to stay with her, and she needed the car.

The stories of her cancer journey weren’t complaints. As Sandy Ernsdorff told Michelle, “There weren’t any options. We did what we had to do to save your life.”

But it wasn’t until she was grown, Michelle Ernsdorff said, that she fully understood what her parents had gone through.

“You can’t comprehend what it means until you become an adult,” she said, “how hard it must have been for my father to walk over 200 miles when his baby daughter was fighting for her life.”

Those memories inspired Ernsdorff to start the Mike and Sandy Ernsdorff Foundation to help families in similar situations. With degrees in nuclear medicine and business administration, Michelle Ernsdorff left her career as a PET (Position Emission Tomography) technician to devote herself full time to operating the foundation out of Chicago.

“We focus on helping families with a child’s cancer treatment,” said Ernsdorff. “Specifically, we help schedule and pay for arrangements between home and hospital, anything from gasoline, clothes, meals, parking, lodging, airfare ...”

Though many things have changed since she was a child, most families still have trouble with travel costs. Forty percent of children diagnosed with cancer do not live within 60 miles of the treatment they need. Travel costs quickly turn into a burden for families already stressed emotionally.

Tina Kobs and Kyle Boswell of Belvidere can tell you that. Their 3-year-old son, Alexander, has leukemia. Once a week, Tina and her mother (Kyle needs to work) go on an hour and 15-minute drive to Lutheran General Hospital in Park Ridge where Alexander is in the first year of what is expected to be a three-year treatment regimen.

Medical costs aside, each trip costs close to $90 with $40 for gasoline, $30 for tolls, $3 for parking and meals, Kobs said. Compass to Care does not reimburse for road tolls, but it gives the family $62 for each trip into Park Ridge.

The money is a big help, said Kobs, who has quit her job to take care of Alexander.

“This takes a little bit of stress off you when you have so much else to worry about,” she said.

“We are a very paycheck-to-paycheck family,” she added. “There are a lot of costs we have to pick up, certain vitamins and liquid diet supplements, special milk because he’s lactose intolerant, tons of children’s Tylenol, a car seat with a back so he gets extra support, a stroller.”

Because Alexander gets chemo in his spine, and because of his illness, he can’t walk very far. Just buying those things, and paying household expenses, is difficult, Kobs said.

“If it weren’t for Compass to Care, I don’t know how we’d be able to get him to Park Ridge all the time,” she said. “What that organization does for people is awesome.”

Thirty families have been helped so far, including four from the Rock River Valley, Ernsdorff said. For two of them, the treatment has ended. Another is taking their son to Texas where his rare form of melanoma can best be treated. When the family discovered they had six days to get him there, Compass to Care made the arrangements and picked up the cost.

Compass to Care has a cap at the $5,000 mark for helping families.

But if treatment continues, the board may grant extended help. So far, that happened once with a family whose child was receiving a third stem cell transplant, Ernsdorff said.

Compass to Care becomes part of the family’s fight against cancer, Ernsdorff said. In 60 percent of the families helped by the foundation, one parent had to quit work in order to care for the child with cancer. While they are stretching a reduced income to maintain a home, care for other children and get the sick child all he or she needs, many sacrifice themselves.

Compass to Care is designed to not only pick up travel costs but make sure parents on medical trips don’t skip meals or eat junk food from vending machines. For as much as a sick child need medical attention, Ernsdorff said, he or she also needs a strong parent.